Sunday, January 26, 2014

Talking About Autism

Yesterday I read an interesting article on the Woman’s Day
magazine’s website entitled “9 Things Never to Say to a Parent of a Special
Needs Child.” [To read this article, please click here.] Citing comments that
mothers of special needs children have had people actually say to them, the
article suggests why these remarks might be offensive and offers alternatives
that may be more acceptable. While I can understand why some of these comments
might seem rude or hurtful or just nosy, I really think that most people who
ask questions or make comments like these genuinely don’t intend them in a
negative way. In fact, I believe that many people honestly want to help, but
they may not know how. Having been an autism mom through toddler, teen, and now
twenties phases, I have a little different perspective that has come over time,
and I offer my thoughts on some of the comments the article deems taboo.

“Wow, you must be so busy.” The article describes this
remark as having a condescending tone, which I personally don’t see. All
parents are busy, and special needs parents often have additional
responsibilities, such as coordinating various therapies for their children.
Yes, I’m busy dealing with Alex, and I’m thankful for organizational skills
that help me keep things rolling and make me a queen of multitasking.

“You should take care of yourself so that you can take care
of him.” The article suggests that this comment is unrealistic because special
needs parents are too busy and/or have too many responsibilities to take time
for themselves. However, the analogy of the oxygen masks on airplane flights
seems to apply well: parents must place the masks on themselves before putting
them on their children. In order to help their children, parents must address their
own needs, too. In fact, I have told other autism moms that they need to take
care of their child’s mother; too often, we think we must always put our own
needs last. Being a parent requires sacrifice, and being a special needs parent
requires additional sacrifices. Yet, we cannot take care of our kids if we are
not at our best.

“We’re only given what we can handle.” This comment, which
is often enhanced with religious significance by attributing the giver as the
Lord, is described in the article as being a “meaningless platitude.” I suspect
that parents who find this comment offensive either feel uncomfortable that
they are perceived as stronger than other people, or they don’t appreciate
viewing their child’s disability as a test from God. On the other hand, this
statement is likely intended as a compliment and a reassurance that they can
cope with the obstacles that come with raising a special needs child. I’ve
always liked Mother Teresa’s quote about dealing with difficulties: “I know God
will not give me anything I can’t handle. I just wish that He didn’t trust me
so much.”

“Have you tried…?” According to the article, this comment
annoyed parents who didn’t appreciate advice from others who were not special
needs parents. One mother remarked, “You have no idea what you’re talking
about.” Although other people may not have first-hand experience, I appreciate
when others show interest and care enough to share research or information they
have found on autism. Because I have spent so much time researching autism, I
usually have already heard about the information, but I’m happy to discuss it
and look for new insights. Over the years, we have tried a variety of
approaches hoping to help Alex, and I’m always on the lookout for something
that we may not have tried yet. Instead of viewing that question as intrusive,
I see it as helpful.

“What’s wrong with him?” While I tend to agree with the
article that this comment is probably rude and nosy and certainly could be
phrased better, I think that the motive behind it may be concern. Maybe I’m not
as offended because I’ve asked the question about Alex myself in frustration,
fear, and/or bewilderment. In fact, in moments of impatience, I admit that I
have asked Alex, “What is your problem?!” And then I remember he can’t help what autism has taken away,
which motivates me even more to attempt to regain what has been lost and to
appreciate the progress he has made in spite of the obstacles. That keeps me
busy as I try to take care of Alex and myself, remembering that I can handle
all things through Christ who strengthens me, and as I try different ways to
eliminate what’s wrong to make him the best he can be.

“But you belong to God, my dear children. You have already
won a victory over those people, because the Spirit who lives in you is greater
than the spirit that lives in the world.” 1 John 4:4

10 comments:

I think the comment "what's wrong with him" isn't meant in the way it is taken. I think someone who asks this question means "what are his special needs that you need to address" It just may be that if they knew they could help in some way. I don't think people mean to be rude or unkind they jus do not know the correct words to use.

Pam, I really enjoyed reading your perspective. I actually think that you have hit the nail on the head and I must remember your words should anyone mention the above phrases. My son got stared at a lot today, more so than normal. My reaction was just to look at the starer and give them a smile.

What a great article - I agree with your point of view as I have a child on the spectrum who is now a teen. Thanks for sharing.

I would also like to mention a great website for families impacted by autism, www.asd-dr.com is designed to help families find the treatments, therapists and services they need in the local area. It also has a lot of links to online support through links to organizations, forums and other references.

Hi Babs,I think you're right that people often say things that they don't intend to come across as rude. That's my point in this blog entry--we need to cut other people slack because they don't know what to say. :)Take care,Pam

Dear Bright Side/Nick's mom,Thank you for your nice comments. It is hard when people stare at our kids and tempting to say, "He has autism. What's your problem?!" Our temptation as moms is to protect our kids fiercely. If we want other people to understand our kids and be understanding of their differences, I guess we need to be more tactful, though. :)Take care,Pam

Hi Cameron,Thank you for the compliment! I don't have your e-mail, so I'm not sure how to get in touch with you, as you requested. I'd be happy to answer your question about the blog, though. You can either post it here or send me a message through my One Autism Mom's Notes Facebook page if you'd like to contact me.Take care,Pam

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including computer classes, social group, and respite care, along with behavioral, recreational, and music therapies. A graduate of Valparaiso University, she teaches seventh grade English on a part-time basis. She lives in Valparaiso, Indiana, with her husband and son.